OUR JOURNEYS

Patient story

Derek

by his mother, Lynda Burdick

Hi My name is Lynda and I live in Massachusetts. This story is about my son, Derek who is 12 yrs old and is a sixth grader at Wellsville Middle School. He lives in NY with his dad and sister. I have two older daughters as well. On Friday, Nov. 2, 2007 according to my daughter, it seemed like a normal morning with Derek picking on her, and her ready to throw a bagel at her brother... They went to school and Derek has gym as one of the first classes of the day.. He was doing his physical fitness test and collapsed and went into cardiac arrest. The school nurses did CPR and used an AED which they had received in January of this year. The EMTs transported him to Jones Memorial Hospital and stabilized him to Mercy Flight him to Rochester Children’s Hospital, where they did all kinds of test and diagnosed him with Primary Pulmonary Hypertension...

I left Massachusetts to be with him from Nov. 3 until Nov. 26 which was the day he was discharged from the hospital. When I got there, he had a tube in his mouth and all kinds of IVs. One in his leg and one in each arm... On the following Thursday they did a Cath from which they could tell what the pressures were in his lungs and heart. His heart was also swollen from not being able to pump the blood into his lungs and it pumps so hard that he has a thicker wall in the left ventricle of his heart which the cardiologist says it can heal itself.. After the Cath, they told us that he had it so severe that they weren't sure how long he would have... But then there was a specialist that knew about pulmonary hypertension in adults. We met with him that late afternoon and did a 180 degree flip.. He proceeded to tell us about the remodulin.. Now Derek is on Remodulin that is administered through a pump into his body...He also takes viagra and coumidin and tums for calcium and like a coating for his stomach...He has medication for nausea and pain also...I'm having a hard time understanding how a healthy twelve year old boy could get this condition...Can anybody shed the light on for me...Thanks!!

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